Friday, February 27

We went to CHLA today. Well, she was scheduled for Hemoglobin, but after today's labs plans changed. :) REGINAS White count is 3,5, ANC 1700 , platelets 141 000.. and hemoglobin almost 12... WOHOOOHO ( yeah , lately I am on WOHOO mode):) So now we are going back on Wednesday for Vincristine and Dr. Dhall appointment :)

Regina is doing pretty good. Her appetite is still not present. She just nibbles on food and that's it. Yesterday we went to Chillis. She ate 1/4th of that tiny cheese pizza and she was done. For breakfast couple of bites of toast and glass of milk. .. it is little frustrating at times, because I do NOT WANT HER TO LOOSE WEIGHT, or go back to Hospital. Medical bills are already killing us. And now there is drama with Avastin- Insurance does not want to cover it... And then BLUE cross CASE manager calls me every day TO CHECK WHAT WHERE WHO, WHY. SHE IS driving me insane. Yesterday she asked what is going on with Regina and what appointments she has.. I told her , MRI, and chemo, and neurologist, and neurosurgeon.... AND YOU KNOW WHAT SHE ASKED ME --- DOES REGINAS DOCTOR KNOWS THAT SHE HAS ALL THESE APPOINTMENTS???

WTF?? I lost it and told her that I wasn't born yesterday. We have great team doctors and nurses, and case managers and social workers. AND I am trying to stay on top of things. SO what are all these questions about it... AND if I need help-- I WILL CALL YOU AND ASK FOR IT.

SHE asked me to calm down , BUT TOLD ME that she understands that I am frustrated.... I just wanted to .... GRRR. She just ruined my evening..

Does she suspect that WE ARE SCAMMING MONEY FROM INSURANCE??? Ridiculous. I have no words. NON. MAYBE she was really trying to do her work, but she sounded like she was on a mission to get EVERY Doctors name Regina uses. AND that did not make any sense. JUST look at Regina's paperwork on blue cross and you get the idea who she sees and how often...

Wednesday, February 25

:) Regina is doing really great considering her situation. She haven't had anymore seizures.Today we went to CHLA for labwork. HER ANC was 750, but platelets ran low ( 49 000). So she was given one patch of platelets.Her last dose of vincristine is schedules on 2nd of March. Then this first round of chemo is completed.Regina has MRI on 14th of March, and after Dr. Dhall has seen Reginas scans, then we will discuss what's next. So please hope that nothing new has popped up somewhere there...Reginas taste buds are messed up. Nothing tastes good. :(:(:( She drinks enough , but food, EEEHHH, not her best friend right now.And that is pretty much it :)::)

Monday, February 23

Regina is doing good . So far these couple of days home have been calm. Only problem right now is- Regina is getting mouth sores, and because of that she is afraid to eat, since they hurt :( BUt other than that - drama free.We have Option Care nurse come in today to draw reginas labs. Looking at R. This morning I take a rough guess that She is getting better. She is all smiles, walking around ( little weak ), brushing her teeth.. ETc. So I am hoping that her platelets and hemoglobin are fine :) ALso hoping that her ANC is back :)

Friday, February 20

Alright. This past 2 weeks have been pretty intense . real rollercoaster with it’s twists and turns. BRRR.Well, Regina started seizing on Thursday night. Nick called 911 while I was hysterically screaming . I have seen people seizing, but since it happened to regina and it was her first Seizure ever, I panicked my pants off…It all happened very fast. Nick woke me up and told me that something is wrong with Regina and I should see it. I RAN to our bedroom ( I was sleeping in REginas bed). AND Regina was in mine. When I got there, Regina was shaking uncontrollably, her eyes were all back and she had really scared look on her face. I JUST Grabbed her and hugged her and told her everything will be alrigt. NICK called 911 and within minutes fire truck was at our doorstep. By then Regina had stopped seizing and she looked ok again. Little confused but ok. Later she told me that she was really scared…

After fire truck ambulance arrived. Regina was hooked on monitors and I was allowed to sit in ambulance also. Regina was present and understood what was going on. We arrived to CHOC around 5 PM. By then Regina was completely back to normal. She was hurried to CT scan. CT scan showed that there was tumor growth BUT , sadly they compared her scan that was done BEFORE her tumor multiplied and they told me that YEAH there is significant tumor re-growth… Then few doctors wanted to poke her without anesthesia, but I told them NO WAY JOSE. You are not sticking that stinky needle into my daughters brain without anesthesia… SO they had to leave… hehe. Iam so glad I DID it, because Reginas ANC is 0 and she can get infection just breathing in air….Well, we finally got a room in PICU, 629 ( but they will move us to 617 I believe). BETTER VIEW ;) And then we saw our favorite Dr. Loudon. He calmed me down a bit by telling us that he thinks most likely it is not tumors that are causing seizure(s). It could be hundred other reasons, and you all know those reasons.So Regina will be put on some medications, and we go from there. Other than that, Regina looks great. PALE, but she does good considering situation she is in right now.Not sure for how long we will stay in here, but I am not complaining. AT least help is right here if things get worse. ( hopefully not ).

THANK YOU my dear Friends for keeping your fingers crossed and hopes up. It is very scary time for us, and I am confused all over. What, how, when… WHY seizures.. BUT again, her brain is in shock…Love you all 

XOXOXOXOXOX<3<3<3<3<3<3<3<3

It is friday night , i am home right now. Regina and nick are in CHOC. Regina is getting blood transfusion right now since her hemoglobin was low. She is also on Keppra ( i think anti seizure meds). She haven't had anymore seizures and hopefully she will never have one.3 night , 3 different floors, and gazillion doctors nurses and other humans who asked same questions over and over and over and over....

Thursday, February 19

We are in CHOC. Regina had seizure around 330 am. We called 911.by then she stopped seizing and was alert and communicating with us. We had about 5 strong guys in our house taking care of one strong but yet so fragile Regina . we were taken to choc by ambulance . Ct scan was performed that showed tumor progression and fluid build up in her brain. We will. Be admitted to picu and I am guessing MRI will be performed later and some fluids will be removed with sharp sterile needle/Regina is alert right now and she is very exited about staying to picu.We are not sure what caused her very first seizure. It could be due to tumor growth, but it also could be something new we have to start dealing with((((()))))Do

Wednesday, February 18

Today's platelet transfusion was success :) Few seconds before transfusion she started picking her nose and she got a mild nosebleed. :( Her platelet count was 32000 ..We have to go back to CHLA On Friday. Possible platelet transfusion and blood transfusion. We also ran into Dr Dhall, and he hopes that next week Reginas counts should start getting better.

On a bad note-- I just got a email from my Sis. She informed me that my moms former barn NOW, summer "house and garage had burned down at night. It is about 10 meters from their house. And they are lucky that fire did not reach their house. I have no details how, what, when. All I know that they had 4 fire trucks there and fire did lot of damage. :( I feel sad.I just don't get it. WHY is this all happening to our family now. We already have enough shit going on in our lives and now this. Doesn't make any sense.

Monday, February 16

NICK IS HOME!!! YEAH!. Regina was super happy to see him. When she heard him come in, SHE RAN to hug him. It is very hard for Regina to walk, and I know that it took lot of strength for her to run like that :)

option care nurse came and drew Reginas labs.ANC is LOW- 900 right now.White count is also low 2300.and platelets are also pretty low, 65 000Hemoglobin 8,9 - It is low also. She gets blood transfusions usually when hemoglobin drops below 8.

Dr. Dhall called us and told us to come in on Wednesday for Platelets. He said PLATELETS WILL BE ready and waiting for her on wednesday. ( I doubt it).

Also DR. Loudon called today and asked how Regina was doing. I told him the whole ordeal about bleeding and leeking fluids. Of course it is never good to leek fluids, but dr. seems not to be worried about it yet. We see him on thursday for quick visit.

Right now Regina is falling asleep. first time in a week She complained headache today. :( Hope it goes away soon.

Sunday, February 15

Yesterday was ok day. Regina did act little more tired and was pale.She went to bed around 7.15 pm. 11 PM I was ready to go to bed aslo. Suddenly REgina starts moving around and wanted to go to bathroom.. AND that is when i noticed.HER PILLOW was bloody. NOT just bloody, it was soaked with blood. ( So I turned on lights and saw that she was leaking blood from her surgery site. Pretty red blood.I started panicking right away, because I thought she would bleed to death. AND I had friends kids over for a sleepover. There I am packing my suitcase in a hurry, making phone calls and nobody is available.I finally got hold of my neighbors and they agreed to take my 3 kids to their house till my other friends get back.

I WAS NOt able to drive. I was shaking all over my body because I was shocked by what was going on with Regina. Mr. F. was nice enough to drive me to CHOC at midnight stay there for hour or so to make sure we are ok, and then he would come and pick us up around 6 AM.

Anyway. After we got to CHOC, I told front desk what is up and they HURRIED to get REgina in as soon as possible. They told me not to worry about paperwork that much, since SHe is in their system already.

Regina was put on normal sailine, and labs were drawn. HEr platelets were low again 35 000 and that was the reason why she was bleeding. ALSo. WHile she was lying down, nurse noticed that her pillow was wet, and she is like- IS SHE Sweating??? AND I am panicking again- NO, SHE IS LEAKING FLUIDS FROM HER BRAIN. THEN ER dr came in again to evaluate Regina again. HE went and called Dr. Muhonen ( neurosurgeon), and got some directions what to do.REgina was given mild sedative, and local anesthesia was applied to her surgery site. Dr. Added few more stices to secure her leaking area. Regina was sleeping. She did not feel a thing. After 2 more hours of waiting they made sure there was no more leaking and we were let home.

OH, and in ER Reginas nose started bleeding also. \ When Dr aske Regina how is she doing, REgina told them - I AM DOING GREAT .ANYWAY, we are home now. Regina is watching tv. I got 1 hour of sleep and trying to stay awake.Nick is trying to get here as fast as possible. SO hopefully in 48 hours he will be home.

Wednesday, February 11

(((( 2.12--- stitches are still in, Dr. Loudon wants to leave them alone for one more week )

I love our friends. I love those that are close to us, and those that choose to stay behind curtains , but once in a while let us know that they are here for us:).I love strangers who reach out to us and ask how they can help. I love those who decide to stay as far as possible, because they know they just decide to do so :)

I also love our doctors- Dr Loudon for performing 4 surgeries, one biopsy and Gamma knife on Regina.Dr. Gajjar in St Jude treating Regina with hard core chemo.Dr Dhall and Dr. Finlay in CHLA for being so understanding and doing their best to please us.

NURSES- who laughed and cryed with us:) Supported us. It has been amazing few years. hard, but amazing. Every single day of this journey we have met so many different and interesting people and have learned about love, friendship , courage, survival... I could go on and on and on....

I want to thank you all for being here for us. Thank you for letters, cards. Thank you for hugs and well wishes. Thank you for great food and drinks.

Maybe some of you think that I am not thankful enough or I am ignoring you. Sometimes I actually am ignoring you. There are times I choose to be alone, but there are moments that I need to be with someone.Sometimes I feel guilty because I feel like I can't be the friend I need to be. I feel like receiving, but not giving back. And it is not the best feeling to have.I know you guys want to help us, and I know helping other makes me feel good. But I can't help this silly "guilty" feeling.

We have been fighting for 5 years for now and it still seems like it was yesterday we got the news first time. Maybe that is why I still have this strength to keep on going. I know we are running out of options pretty soon. This chemo round is deciding round. MRI is scheduled on 14th of march.... Honestly. not looking forward to it. ..

Regina is sleeping right now:) We are going to CHOC tomorrow to get her stiches removed. We also have home healtcare nurse come in and draw her labs tomorrow.I just hope that her platelets got a boost and are high enough.:)

Most likely we get to go home today.Reginas platelets are running low ( 30 000), so she has to get platelet transfusion.No more fevers, no more runny nose, no more coughing. those antibiotics she is on must be somethings Else. for a second I thought I gonna "borrow" some of hers ...

We get to go home , IF she starts drinking. THey turned off her fluids , so she must get thirsty soon :)She , on the other hand- DOES NOT WANT TO GO HOME! That is what she told doctor.. SHe wants to watch TV all THE TIME. No playroom, no arts, no crafts. Just TV. Kind of like moment out of 5th element movie...

Before we go home today, we MUST stop in Chilis. She wants to eat chilis tonight.( IF WE GET OUT OF HERE )

Monday, February 9

Well, today started with regular checkup. After nurses tried to take Reginas blood pressure 5 times with no luck, things started going little crazy. Suddenly we had bunch of nurses around her, and she was assigned URGENT CARE room. her blood pressure was so low, machine did not pick up her heart rate. She was put on extra fluid on high rate, to get her hydrated. Also her oxygen levels were low, and doctor could not explain why. they were 97 ( it has to be hundred), so she was given some oxygen. After 30 minutes on IV fluids everything was back to normal. THEN, nurse decided to take her temp one more time before chemo... SURPRISE!!!!! it was 38,9. I told her, NO nO NO, TAKE IT AGAIn. 30 minutes ago it was 38,6. ANd her ANC is 6000. SHE can't have fever.. sadly repeat test also showed that she had fever. SO, Regina had to be admitted. NO chemo. Right now she is on couple of different antibiotics, but most likely she has cold. Her nose is really stuffy, and she is getting a cough :(:(:(:(:(:(:(.I just hope that she is getting better soon and we get out of here with no time.

After Regina fell asleep around 8 pm, I told nurse that I have to go home to pick up some things, and I also gave my key to my friend. I was back in CHLA 10.30. It is 54 mile drive one way, and luckily traffic was awesome:)

Now we are stuck in CHLA trying to figure out what's up. She does not mind it though. She watched FOOD network for couple of hours and thinks that Paulas husband is cool, since he likes to eat desserts. Not like Daddy... lol

We are in CHLA right now. Regina spiked low grade fever38,6, and she had to be admitted. But prior to that her bloodpressure dropped,her oxygen levels dropped(97). She was also mildly dehydrated due to Vomiting.We will be inpatients till Wednesday afternoon. I have no clothes, no comb here with me. Gabriel is spending night with my friends. I think they should temporarily adopt him;).

Sunday, February 8

Regina is doing much better today. Yesterday she threw up twice. Today once so far, which is good:). TV is still her best friend.Today I called Reginas REAL best friend and asked if she could come over to play. Regina has been playing one hour non stop:D:D:She did loose some weight and her tiny legs are even smaller :(. tomorrow we are going to CHLA for "chemo" visit. We also meet Dr. Dhall and set up MRI in 5 weeks :)

Thursday, February 5

:) day 2 after chemol Regina is feeling good, but she throws up everything that goes in. SHE is hungry and eager to eat, but sadly her tummy is not on same page with Reginas needs.Today we went to see Dr. Loudon. I spoiled him with 3 bottles of great wine and with Riedel wineglasses. LUCKILY he liked what I got for him..hehe. Who can say not to good wine... I wanted to take cheese with me also, but I thought that then it would look like I am asking him out for a picnic 9 am .. lol.

We have to go back to see Dr. Loudon next week. --- Stitch removal procedure...

And that's pretty much it... OH, I took Regina with me to Pick up gabriel today. At first she was little shy, and ignored people around her, but when she saw her classmates, I saw a tiny smile on her face :)

Wednesday, February 4

Yesterday was easy day. This morning was also easy one. TILL NOON. I think chemo finally started working or whatever.. and Regina started throwing up .. A LOT. They almost did not let us home but since IT WAS NOT MY FIRST TIME TAKING CARE OF HER, they gave me green light, and we finally got discharged around 6.45. She threw up a lot while we drove home.Right now she is resting peacfully. TOmorrow we have to see Dr. Loudon, just checkup, and most likely he will remove her stiches.on 9th, CHLA vincristine Chemo again, but this will be short stay.

Tuesday, February 3

I AM SO BORED RIGHT NOW. We are in CHLA right now. Since regular neuro/onco unit did not have beds for us, we were placed BMT ( Bone marrow transplant unit), same floor. WELL< I AM loving it. IT is single patient room, and it is quiet in here. Boring part- Reginas tv does not work. We have been here since 1 pM and no it is 7 pm , and chemo has still not started... they had to check her urine, find doctor,, hook her up with IV fluids... We are just hanging out doing nothing.. WELL, at least I am doing nothing.Regina had great dinner-- fish sticks, cantaloupe and some kind of drink. Right now she is playing her DS.Around 8 PM 6 hours of chemo will start ( cicplatin), and then one oral pill. After that we have to stay here for 15 hour for monitoring and IV fluids. YUCK. YUCK. YUCK.

Myself I went to cafeteria. Got myself HUUUGE salad, with lot of dressing, HUUUGE plate of cholesterol, ( deep fried chicken wings), and giant diet coke... THIS IS my hospital comfort food. Noting is more comforting than crunchy fatty chicken during hard times. OH, sadly they did not have buffalo wings, so I dipped my wings in Tabasco sauce... hehe..Also, I am starting to loose my "cool"... everything bugs me... Mess around me, mess in me, mess in other places... noisy people, loud advisers, know it all human beings who wish us well.AND most of all-- I am loosing my cool because I am again at that point that I can't control my food cravings. It is horrible feeling. I don't feel full after I eat. I work out every day. I do 1 hour cardio weights combo, but after that I am so exhausted and tired and hungry, that I eat triple amount of food :(. So if you wondered how I am doing- this is how.]That's pretty much it. Nick is going to travel soon, and I get some space ;) . I know he does not want to go away from Regina, but somebody has to work. :)

Monday, February 2

We had a great weekend. REgina is doing good:)Today, Regina and I are going to CHLA ( LOS ANGELES), for overnight to start a new IV chemo. It is 6 week cycle , - once Cicplatin, twice vincristine, and some oral chemo. LETS JUST HOPE THAT HER COUNTS StAY UP...